Carol Jubb lives with a man she often can barely recognise as the outgoing, confident lad-about-town she married 48 years ago.
Dementia, supposedly the disease of the elderly, stole her husband. It took a hold on his brain when he was just 58 and changed irrevocably the path of their married life.
It has made him so afraid of forgetting, or feeling out of his comfort zone, that he has shrunk down his world so it fits in a tiny framework he can hold the edges of. And feel safe.
Carol? She’s a young 65. She likes socialising. She loves to dance, to shop, to go to their caravan in Whitby. She longs to fly to Thailand to see, for the first time, their year-old grand-daughter.
And she wishes she could be doing all of that with Dennis.
Tragically, though, at an age when they should be enjoying the autumn of their retirement together, Carol has become a cross between a carer and a mother to the once capable, clever man who used to look after her.
All Dennis likes to do is sit in his armchair, wearing his favourite sweater, continuously watching the news. “For hours and hours on end,” says Carol, raising her eyes to the ceiling ever so slightly.
It gets on her nerves, does Dennis’addiction to BBC News 24, his endless routines (for the last ten years they’ve gone to Ostend for their holidays) and his irrational fear of changes as small as being asked to put on the jacket she got him for Christmas.
“Dennis was absolutely insistent the jacket wasn’t his. That some stranger had walked into our house and left it there,” she tells me. “He is convinced he only owns three jumpers and two pairs of trousers.”
But love, understanding - and biting her lip - hold the pair together. And they will ’til death do they part.
For better, for worse; in sickness and in health. That’s what they promised each other when Carol was just 17. The handsome, athletic love of her life was a worldly 21 and illness and old age were too far away to even think about.
Dennis was a painter and decorator, and eventually a painting surveyor with the local authority. Carol loved working at a busy town centre newsagent’s and they raised two sons. They seemed set for life.
But then Dennis started to forget things. He would lose his keys, then find them hanging, forgotten, in the front door lock. He would totally lose track of what he was talking about and repeat things he’d just said. But he was only in his 50s. The couple assumed it was just down to the ageing process.
Then the police came knocking at the door. Dennis – who an hour earlier had given me near-perfect directions all the way from Sheffield to their semi in Scawthorpe, Doncaster – is keen to take up the story: “They had come to tell me I’d driven off from the petrol station without paying,” says the 69-year-old.
“I went to that garage to put £10 of petrol in the car every single week. I couldn’t believe I’d done such a stupid thing.”
He was so perturbed, he went to see his doctor.
Because Dennis had a serious heart condition, which could have been causing some of the symptoms, a brain scan and memory test were given. The results revealed it was Dennis’ brain that was failing, though. He was diagnosed with Pick’s Disease of the fronto-temporal lobe, one of the most common forms of dementia in people under 65.
It struck fear into the pair of them. They knew how bad dementia could get.
Only a few years before, Carol nursed Dennis’ mother Lillian through rapidly advancing Alzheimer’s.
She recalls the mother-in-law who remained sweet and gentle to the end: “Her condition worsened very quickly. I’d find teaspoons in the washing machine soap drawer and all the sofa cushions up in the bedroom.
“Once I found her attempting to make a meal out of her husband Arthur’s pyjamas. She had neatly cut them into little strips, arranged them on a plate and put them into the microwave.”
When Lillian became doubly incontinent, it was Carol who had to bathe her and replace bedding every day.
“It was so cruel; Alzheimer’s took all her dignity,” she says softly. “Lillian spent the last three years of her life in a care home. It was terrible to watch her decline. But I now feel she was preparing me for what was about to happen to Dennis. Her ordeal made us get help for him very quickly.”
His medication was started immediately. “That’s the key; getting help early,” says Dennis. “It can’t cure you, but it can slow down the progress. Give you more time.”
There was a dramatic improvement. The fact that he is still living at home, and still able to correct Carol when she tells me their son Richard lives in Phuket, when it’s actually Pattaya, bears testament.
He and Carol are passionate about getting the message out about early diagnosis and treatment. It’s why they are telling their story. They want to reach the 7,926 people believed to be living with undiagnosed dementia in South Yorkshire.
Says Dennis: “A lot of people are afraid of being told they have it. So they just try to live with it, but it won’t go away.
“Just like with any other illness, if you have symptoms you have to get them checked out – and the earlier you start on treatment, the better your chance of being able to manage the symptoms.”
His illness manifests itself in strange ways. “He can’t accept any change. Everything has to be the same. Whereas I now long for change,” says Carol wistfully.” In between looking after Dennis, she battles to look after herself.
She has hobbies, arranges outings, sees friends. “It’s really important; it’s keeping me sane,” she says.
“The one thing I can’t do is lose my patience and blow my top because none of this is his fault. And he is trying so hard to keep going.”
Every day, Dennis strives to train his brain; “Use it or lose it, I say. That’s why I watch the rolling news bulletins,” he explains. “I’ve always loved politics and current affairs and I still want to know what’s happening in the world.”
He still wants to play a part in it, too. He and Carol are part of a group who helped launch People Relying On People, a self-help group for dementia sufferers under 65, and their families.
Last year, Dennis got an MBE from the Queen for his work with PROP, Carol tells me with great pride. Although she laughs, too, at the struggle it took to get him into a hire suit and off to Buckingham Palace.
The Jubbs look for humour in their situation and ensure there is give and take on both sides.
“We stay positive and I push Dennis to do little things for himself. I don’t molly-coddle him. If he can’t remember what day it is, I tell him to go and look at the calendar in the kitchen.”
Each year, a holiday is their goal. “Dennis would be content to sit in front of the TV all day, but he goes with me because he realises I need more of a life than that,” says Carol, who has finally put her foot down about Ostend. It had become the only foreign destination Dennis, once a keen traveller, felt safe going to, but she’s managed to persuade him that Germany is only a bit further on the coach. The beseeching look on her face urges me to nod in agreement.
There is a strong communication between them. “We are great talkers; it gets us through such a lot,” says Carol. “I tell Dennis what is driving me mad and he tells me he feels panicked when he can’t find something, or is afraid of feeling lost. And though I still feel frustrated, it helps me to understand.
“And ultimately, I feel so sorry for Dennis. He’s lost a part of himself.”
“And I feel sorry for her,” replies Dennis, quick as a flash. “I’m quite content as I am. But my illness has changed her life so much. There are lots of things Carol can’t do now, because of me.”
He knows the day will probably come when his wife has to make the decision to move him into a care home. And he has already given her his blessing.
Look for the early warning signs
A Government pilot campaign has been launched in South Yorkshire to encourage people to recognise the signs of early dementia and seek advice from their GP.
There are an estimated 15,419 people with dementia in the county - with up to 7,926 undiagnosed and missing out on treatment and support which can improve quality of life and maintain independence for longer.
Early warning symptoms:
Struggling to remember recent events, but being able to recall things that happened in the past
Finding it hard to follow conversations or programmes on TV
Forgetting the names of friends or everyday objects
Difficulty recalling things that have been heard, seen or read
Repeating things or losing the thread while speaking
Problems with reasoning
Feeling anxious, depressed or angry about memory loss
Feeling confused even when in a familiar environment
For more help and advice, go to www.nhs.uk/dementia or contact your doctor.
On the rise
Sheffield has 6,312 diagnosed dementia sufferers, Doncaster has 3,535, Rotherham has 2,964 and Barnsley 2,608.
By 2021 it is estimated the number of South Yorkshire sufferers will have risen to 19,8141.